Just introducing myself.

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Hi there,

My name is Chonny, I'm 25 and live in New Zealand. Last year I was a fulltime single mother of a two year old (still am, just now she's three), studied fulltime, got a Diploma in Film and TV Production majoring in Documentary Directing and a Cert in Maori Performing Arts, outside of study I was heavily involved in a performing arts company and was working out regularly. I was barely still. Sometime in the second half of the year was when I started to get ill. My immune system has never been great so I've always had the mentality of just pushing through, However the fatigue didn't go away, accompanied by daily headaches. I'd just landed myself a part time job in the industry I'd trained for, it was an entry level job and prettyyyy simple. I only had to work a few hours a day but I was really battling with it. The drive home felt like I was leaving a 12 hour shift with a severe hangover. 

I'd been to the doctor twice last year...she told me I had tension headaches and eye strain and prescribed me a whole bunch of drugs that make you drowsy (good one), anti-depressants and told me to go to the optometrists. 

I ditched the anti-depressants, I wasn't depressed. I took the drugs. I didn't see the optom at the time because of costs. So I went back to the doc this year but this time I decided to try a different one as this one just wanted me out the door as soon as i stepped through it. My next doc asked me if I'd ever suffered from anxiety...yes I have. And that's all it took for her to become tunnel-visioned. More anti-depressants and a clinical psychologist "on a history of anxiety and clinical depression". I felt destroyed. Here I was, so hopeful I'd get an answer and I end up with that answer. Not at all saying that anxiety and depression are not something to take seriously because they totally are. But I KNEW that this was not the cause of my symptoms. I know the symptoms of anxiety, I've lived them. She'd got it the wrong way around, my "mood" was not causing my symptoms, my symptoms were causing my mood. Simple, yet I felt I couldn't tell her this for the thought of being ridiculed.

Annnyyywaay, I eventually ended up with the specialist I'm with now who understands!! And not only that, he started asking me if I had certain things going on, which I did. He got more bloods done that the other doctors hadn't and found that I was low in several things so is treating me for those. So I'm hoping that'll help. I'm only working one day a week at the moment but I'm struggling even with that. I don't have the mental focus to be able to deliver/drive. I'm thinking of leaving so that I can make this a time of healing. Does anyone have any thoughts on that? I'm still a bit up in the air.

My daughter is at daycare fulltime from 8:30am-6pm. During that time I'm mostly in bed, I worked out that I spend on average, 20 hours a day in bed. When I realised that, I thought to myself, ok that's a bit extreme and a bit lazy, I'm sure I can do a bit better than that... That day I tried to do a few hours of work and went to a graduation ceremony for a couple of hours that evening. I struggled the whole day and was destroyed by the time I finally got into bed at 9pm. lol. The next day I woke up feeling I'd been hit by a bus and also felt a cold coming on. Ohhh nope maybe it isn't laziness after all. 

The weekend just past I tried to do a few things with my daughter as well. Low energy outings. It's Sunday night and I feel pretty bad, muscles are aching and the rest of it! 

Guess I need to learn to accept that this is real and this time I can't push through in the way that I used to or it'll make me worse...that's probably the hardest part for me.

This post has been such a long vent! It was not my intention for it to turn into a big moaning rant! My apologies. If you made it to the end of this i have to say that I am surprised!! And very grateful that you took the time. But anyway, I look forward to meeting some of you and being part of a place where people understand!

Chonny smile

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  • Posted

    Hi Chonny I've had CFS / ME all my life and tried everything. It's stress related and effects sensitive people. Take vitamin D with magnesium and calcium for a miracle cure. It saved my life. 
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    • Posted

      Hi Fran,

      All your life, gosh I can't even imagine that! You must be a warrior! 

      Yes my specialist has put me on Vitamin D tabs, Magnesium tabs, B12 injections, liquorice root and iron infusions so I'm hoping for a miracle smile

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  • Posted

    Hey Chonny, David from Scotland here. I'm 6 months into my CFS. In the beginning i was very unwell mid Nov2013 viral like symptoms although i have tested negative for EBV, glandular fever, hepatitis etc Since Jan some of the symptoms dissapated but i was left with the deep fatigue which can get really bad where i find it hard to walk. Prior to this i was a trithlete 6 years. I've phoned for an ambulance twice for the first time in my life as i felt like i was dying, really i thought this is it, my heart is about to stop. But here i am. That's the hit by a bus feeling.

    I've realised we cannnot puch through this pacing is crucial.I too thought i has been lazy, try to do more and end up worse. So my attitude is not the problem and neither is yours. All i am doing is pacing, eating really nutritious food and recently started acupuncture and herbs. Hoping for that miracle and for the nightmare to end. I had to stop work in January, as it was very demanding working in a warehouse with lots of heavy goods. Take care, this message has drained me. confused

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    • Posted

      Hi David try vitamin D, magnesium and calcium, one allows the other to work. I read that people are misdiagnosed with CFS and that a deficiency of these are the problem. Go to you tube and type in vitamin D deficiency and see all your symptoms under that heading. I've had ME all my life and my fuzzy heads, migraines, sensitivity to light, smells, and noise plus the malaise and exhaustion have disappeared since I started taking these supplements. I was wheelchair bound often bed bound and often didn't want to carry on living with ME, now I'm normal after one month ! Can't believe it free at last. 
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    • Posted

      Hi David,

      Thanks for your reply. It's such a great experience for me to hear from people going through the same thing. I can imagine how hard it must be for you to submit to this after being a triathlete for so long. Sometimes I have dreams that I am going for runs or working out and that I feel great! And then I wake up.. lol. 

      And that's so crazy that you mention the ambulance thing. Just the other night I was lying in bed and in my head I was thinking, "okay just get ready to call an ambulance before you pass out." lol. I felt so strange (more than usual), paralysed (that happens sometimes), heart racing, feverish, arms felt like they were heavy but at the same time felt like they were floating. I often have this happen to me but this time it felt pretty extreme. 

      I've never tried acupunctire, how are you finding it? I'm taking a bunch of supplements that my specialist has given me but I still need to change my diet. I'm finding that the hardest thing as I love my food, especially now that I don't have the energy to do anything, it's comfort food really. Which I know is totally counter productive. 

      Hope you got a good rest after your response smile Really appreciate it.

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    • Posted

      Hey Chonny. I liken the times when i called an ambulance was as if my entire body was turning to stone. Not to mention i feel so lifeless my heart is about to stop. I am really enjoying the acupuncture and have felt more relaxed about it. It's a challenge for me to get there but i have to make it in the hope of regaining my health. I do think it is working but it has only been 2 weeks, so watch this space ! Apparently the clinic has a 96% success rate.
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    • Posted

      I know former oylmpic champion triathlete Emma Snowsill got CFS a and she used acupunture to ge herself back, other athletes use it and they wouldn't if it was hogwash.
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    • Posted

      Ughh!! That's so scary! What kind of feedback do you get when you go into the hospital? I get a little worried sometimes as I have a three year old daughter (just her and I live together) and sometimes I feel like I'm paralysed and I'll vaguely hear her calling me and what not but I literally can't respond to her. Or if I can it's really hard work but I often can't move either. I will talk to my specialist about this. Let me know how the acupuncture goes! I'm open to trying different things, well with the limits of finances lol. 
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    • Posted

      I think that acupuncture does help some people with CFS. Just as with all the meds and other stuff, it doesn't work for everyone. It's worth a try, because unlike meds, if it doesn't work, there are no side effects.
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    • Posted

      Hey chonny, how are you doing?

      I really appreciate you giving me the name of your specialist.  I looked him up and first and foremost I can see why he is sympathetic to symptoms like ours - because he has lived through it too.  I have read a lot of accounts (like David's) where people with loads of energy and who are fit and healthy beforehand are struck down with this debilitating fatigue.  We try to make ourselve get up and out and doing things, but by the time you get home you can barely unpack the shopping.

      I am taking a bunch of supplements at the moment, all the basic stuff, to see if it makes a dent in my symptoms, as I'm saving up to make the specialist appt.  I recently paid almost $600 to be told I'm "depressive" but I just don't buy it.  Mainly because 75% of adults have been prescribed anti-depressants and it has just become a lazy uncaring quick-fix for health professionals who have too many patients on their books.  Didn't mean this to be a rant either, but whenever I think back to my endo appointment, I feel furious and offended.  I am willing to try lots of things and put in the effort to help myself, but I'm not about to give up and turn to mind-altering medication on one person's say-so!

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    • Posted

      Hi David,

      I think back to a few times I got home from work and lay on the couch, and all I could do was see and hear my own breathing.  I couldn't bring myself to move my limbs or even speak/respond when my flatmate was calling out to see if I was home.  I just thought at the time I was unusually tired, but now I read about other people's experiences it is way beyond tired isn't it?

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    • Posted

      Yeah i call it a zombie virus. Like this morning i rise and feel totally lifeless, can barely move my legs. I feel i am at deaths door to be honest, the way you would expect to feel when you have lived your life and are approaching 100.
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  • Posted

    Hi a really good web site is 

    www.actionforme.org.uk have a good look at it lots of good advice. 

    My husband has CFS and he was also faced with the chicken or the egg with depression. He also worked out he was not clinically depressed just low in mood due to having CFS.

    my husband has occupational therapists coming to our house tomorrow they are attached to a CFS/m.e clinic in our local hospital . They are going to sit with him and work out with him daily routines thar will enable his body to recover ... Will let u know if they have any gems .....

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    • Posted

      Hi Sally!

      Thanks for that, I'll be sure to check it out. 

      Yeah I think I found it most frustrating that my doctor wouldn't listen when I presented her with my list of symptoms, just said we were "in the early ages of treating my anxiety". I was so disapointed that I broke down in that consultation, which in her mind just made it concrete that she was right.

      Oh that'd be great thank you! I hope that it goes well for him, good to hear that he now has the right support that he needs. 

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